Saturday, February 6, 2016

Small Victories Realistically Celebrated - Health Update

I realize I have been neglecting my poor blog a bit! To be honest I just haven't had a ton to write about since the amount of appointments I typically have in a week has greatly decreased. The reasoning behind this being, I have completed just about every known diagnostic test I could possibly need in the near future, I am no longer trialing new medications since Cytoxan is my treatment plan for the next year, and I finally have a team of doctors I feel can competently care for me. Between these three situations my need to visit my physicians has seriously slowed, which has been a breath of fresh air for me! However, unfortunately for me readers it means less updates.

I still find myself quite busy with healthcare though! I am currently running Home Infusion twice a week, attending Physical Therapy twice a week, starting a new BiPAP sleeping therapy, and working on titrating down a few long standing medications now that Cytoxan benefits are starting to show. Not to mention running two medical support groups, assisting with a two local hospital clinical trials, and attempting to finally have a social life! (Got to fit in the "normal 24 year old" somewhere! lol) So you could definitely say my life hasn't slowed down much.

I am going to be honest, I was very hesitant to agree to Physical Therapy, the reason being? It's boring and slow paced, and as I am sure you can tell -- I am not a slow paced person. Also, though I hate to admit it, there was one other reason I was hesitant. It would create a weekly schedule.
I cannot tell you how nervous I was to have "somewhere I needed to be" twice a week. While that seems ridiculous as probably everyone reading this blog works 5-7 days a week, I have not had any weekly commitments since ending my profession. The thought that I was to be responsible to get out of bed and make it to PT scared me. I honestly cant explain why -- but it did. I remember the last few months of working back in November of 2014, terrified everyday to go to work in pain, exhausted, and crippled. Wanting nothing more than to stay in bed and sleep. I adored my career, but my body did not. I felt like such a failure when I couldn't attend work due to my illness. After a 30 day hospitalization, and the onset of State Disability, I remember waking up everyday with absolutely no schedule for the first time in my life. No school, no work, no commitments. I was able to one hundred percent focus on my body and its needs. If I felt sick I stayed in bed, if I was in pain I stayed in bed, if I couldn't leave the house that day I wasn't wracked with guilt. All that shame and fear I had while working disappeared, and with it so much of my anxiety.
I know it's irrational to worry about a one hour twice a week commitment that will only better myself, but for some reason the feeling is there. I really am enjoying PT though, and hope these feelings of worry will dissipate in the near future. Right now we are working on isometric strengthening of my arms, legs, and core.

I am extremely excited to start removing, and lowering the dosages of my long term medications as the Cytoxan begins to eliminate their need due to its high potency. I currently have cut out a few prescriptions completely, and even began to lower the dosage of my steroids. Extinguishing the need for Prednisone has been a goal since I was first prescribed it in 2011. For the first time in 4 years I am below the 10mg mark! I cannot tell you how excited I am to (hopefully) get all the way off this drug by summer! Maybe one day I will lose the "moon face" it has so graciously provided me the last many years. Woohoo! Even with all the purging of medications I am still taking fourteen prescriptions (not counting infusions or as needed meds) a day to function somewhat normally. While that still seems like a lot, it is actually a huge achievement! Prior to Cytoxan I was on twenty-three.

While there are some things I know won't improve, or ever change with my health, I am happy to see small victories being made. I am grateful for amazing physicians who finally have me on the right treatment plan to give this illness hell -- and hopefully prolong my life a good few years. While there is no guarantee the positive effects will last, I will take every "decent" year I can get! Please remember there is no cure for my ailments, no treatment that can simply put it into remission, or extensive surgery that can take it out. I will be fighting the rest of my life whether it be direct effects from the disease, or the side effects of harsh treatments. Life with autoimmunity is a constant battle, one that is often lost; however, that doesn't mean I will ever quite celebrating the small pieces of my shattered life I am able to reclaim -- even if it's only for a moment before they are lost again.


  1. Hi Chanel,

    I am so thrilled that you are feeling better, seeing improvements, and getting on with life! It sounds like you are pretty busy in fact. Thank you for taking the time to update us on your progress! Congratulations­čśâ!
    Reading about how you felt terrified about going to work sick and exhausted, echoed the fears and feelings I had prior to "officially" ending my career. It is nice to know I was not alone in feeling that way. Starting this week I will be on a schedule for few hours twice a week. I have a little anxiety as well, probably because I am afraid I might ignore my body when it tells me to stop and rest, for the sake of keeping to the schedule. Anyway, one day, one minute at a time, right?

    Take care!

  2. So glad to hear you have less pills to take and less docs to see. I finally finished a six week round of antibitotics for a non-healing ulcer that had to be surgically removed and it feels so good to not have to take those meds along with all the others (I have sclero, lupus, and hypothyroidism) I'm finally back to my normal 10 pills a day and it's so much easier! I had to take those antibitoics three times a day and there were 3 of them! Made my stomach do flips each time. I really hope they cytoxan works for you! I did two rounds of rituxan in sept and oct of last year and I feel like a brand new person ever since. I dont have PAH like you, but I did have lupus nephritis affecting my kidneys pretty bad so we're hoping the rituxan did it's job. I go in for a 6 month follow up on thursday and am hoping for the best. I COMPLETELY understand how you feel about the "no commitments" thing. I was finally able to get back into the classroom this OCT part time teaching creative writing classes and I still fear not being able to feel good enough to get out of bed 4 days a week. But so far Ive only missed TWO DAYS for not feeling well, so I'm proud of myself for that.
    you'll do fine! and people are usually more forgiving than we think, so if you have to miss in order to take care of yourself, all will be alright. Stay strong! and feel free to check out my blog on all of this too!

    1. Oh man girl... Ulcers are THE WORST! I am so sorry it didn't heal! I am glad to hear your off the antibiotics and on the mend from surgery. I am also ecstatic to hear Rituxan made such a difference for you. It is a wonderful drug! I was on it for two years and it helped my joint pain a lot! I'll keep my fingers crossed that it helps the kidneys! I also have lupus but it has yet to effect the kidneys thank goodness. Thank you for the well wishes! I always love talking to other sclero-patients :) Love your blog! You are such an awesome fighter!